The Times view on taking myalgic encephalomyelitis seriously: Chronic Condition

Andy

Andy

Retired committee member
It has taken a long time for myalgic encephalomyelitis (ME), or chronic fatigue syndrome as it is also known, to be treated with the seriousness that it deserves. This debilitating illness can afflict people of any age with symptoms that include exhaustion, extreme pain in muscles and joints, dizziness and hypersensitivity to light and sound. About 250,000 people in Britain suffer from the condition, 25 per cent of whom are completely bedridden for months or even years. Many others have been left unable to work full-time while some children have missed years of schooling. Yet there is currently no reliable way to diagnose ME, no known cure and until recently there has been precious little research into the causes of this crippling disease.
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Sign-up/paywall, https://www.thetimes.co.uk/article/...yelitis-seriously-chronic-condition-5m0dw5tv7
 
Thanks for highlighting this. It seems it's a leader article in the Times today.
I can't read it all, but from what I can see above, they are making the links between
- the DecodeME study showing ME is at last being taken seriously,
- the problems of gaslighting and wrong treatment for decades, including child protection proceedings against parents,
-and the current concern that lots of Covid-19 patients are getting post viral symptoms and may end up with ME.

It's an exciting and possibly pivotal week this week, with at the same time the DecodeME announcement, Paul Garner's latest article in BMJ making the link between post-Covid and ME and highlighting decades of mistreatment of ME patients, and Mark Vink's reanalysis of the latest Cochrane Exercise review fiasco.

I feel a glimmer of hope.
 
Cobbled together from that Facebook post:

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Trish said:
It's an exciting and possibly pivotal week this week, with at the same time the DecodeME announcement, Paul Garner's latest article in BMJ making the link between post-Covid and ME and highlighting decades of mistreatment of ME patients, and Mark Vink's reanalysis of the latest Cochrane Exercise review fiasco.
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Maybe to develop ME/CFS one often needs the right combination of bad things to be present at the same time. Like a certain genetic background, a certain immune background, an infection, and not enough rest.

For society to finally take ME/CFS serious there may also need to be the right combination of things to be present at the same time. :)

There may be some more good things coming up soon, like the NICE review. The coronavorus pandemic is certainly helping. It is now very evident that infections cause lasting problems in some people.
 
strategist said:
Maybe to develop ME/CFS one often needs the right combination of bad things to be present at the same time. Like a certain genetic background, a certain immune background, an infection, and not enough rest.

For society to finally take ME/CFS serious there may also need to be the right combination of things to be present at the same time. :)
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definitely seems to be the case with my daughter and aunt.
 
Im really happy to see this. But I also hope in the days/weeks/months to come, that we will get even more articles. And that they won’t just say people are severe for “months or even years”, but for decades or even for life. Bedridden, sometimes unable even to use a commode, some are paralysed, tube fed.

And I also hope that we start to see some articles, about the sheer torture inflicted on people that is graded exercise Theory. It’s not just about it being hurtful to be told your illness is psychosomatic. It is torture, to make people whose disease process is intolerance to exertion, to being made to increase activity and exercise..and it rips your life apart - taking you from being able to walk about, to being in a wheelchair, unable to lift your head up or feed yourself. We need articles about that. I hope they come...
 
wdb said:
Yes page 31, it's rather small though
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Gosh so another 2 pieces in times today then... the full page about child protection proceedings and this 'view' piece too?

Crikey. We can expect something really heinous from the BPS kickback soon then. Not necessarily in the Times, just somewhere i mean. They must be seriously peed off at this general change in the narrative, something will have to be done...

Brace yourselves.
 
Nice. Both 1980,’s and 2018 are inaccurate, but it is good to see a english paper getting things just about right, since much of the eminence-madness originates from here.

Nobody wants others to be ill, but maybe there is something good in the aftermath of covid-19 for ME-patients. Then again, it is absurd that we have had to wait for a virus and a pandemic to actually take serious illness seriously. But a paper writing this is not a guarantee for anything at all. The sad thing would be more senseless propaganda for GET and CBT. Not unlikely, cause you save a penny or two...? Not.
 
This is a very valid point. I wonder if someone might like to make it in a letter to The Times. I would do it myself but I’ve just submitted a letter making a couple of different points. There’s probably never been a better opportunity to get a letter in The Times about ME: letters@thetimes.co.uk – include full name, address and tel no; keep it under 250 words; and try to send it today.

 
lunarainbows said:
Im really happy to see this. But I also hope in the days/weeks/months to come, that we will get even more articles. And that they won’t just say people are severe for “months or even years”, but for decades or even for life. Bedridden, sometimes unable even to use a commode, some are paralysed, tube fed.

And I also hope that we start to see some articles, about the sheer torture inflicted on people that is graded exercise Theory. It’s not just about it being hurtful to be told your illness is psychosomatic. It is torture, to make people whose disease process is intolerance to exertion, to being made to increase activity and exercise..and it rips your life apart - taking you from being able to walk about, to being in a wheelchair, unable to lift your head up or feed yourself. We need articles about that. I hope they come...
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Absolutely, and very definitely agree! We need more articles from currently uninitiated journalists. We need these articles to delve much further into the true, and prevalent nature of this horrific disease. We need numerous articles that reveal medicine and governments' neglect and mistreatment of pwME. We need these articles to acknowledge GET for pwME is torture. And, CBT to convince pwME GET is not torture is unethical.
 
Yes I thought about Rod Liddle's article in the last few days for some reason. It's great to see these articles today, but really they are no more than we are due, very late, and still contain horrendous GET nonsense.

For a long time the Times & co have been a big part of the problem, and even now that they are doing a very good impression of a rat scurrying off a sinking ship, we still don't know if they'll be publishing a few more thoroughly offensive BPS articles "for balance" over the coming weeks. So pardon me for remaining steadfastly grumpy and curmudgeonly, but I won't be getting the flags out until they grow a backbone, start doing some proper journalism and tell the SMC / BPS crew where to shove it, if not publicly, then at least in deed by not giving them the space they don't deserve. The UK national press were happy not to give the patients voice a space for a few decades, so I don't see what the problem would be. The BPS crew are imposters who have no business commenting on ME anyway, and I'd prefer to see their abuse exposed rather than them being given a platform to peddle more of their nastiness over the coming weeks.
 
Ooo naughty Nina 'doctor shopping'









Edited to add... for anyone reading who is new to the field.... 'doctor shopping' is the pejorative term often used by those who want to frame the perfectly natural, healthy & unfortunately necessary search for a doctor who is sufficiently competent/educated to provide answers & support, as evidence of psychological pathology. Rather than the frustrating, disheartening & desperate journey that it is. It's outrageous that someone should need to see so many doctors simply to get a diagnosis, even more so that it's often framed as a psychological flaw in the sick person rather than general medical incompetence in this area.
 
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